Columns and Blog Entries

November 15, 2010

For our World AIDS Day 2010 section, we wanted to capture the diversity of the AIDS community. So, we reached out to people across the world -- mostly those who have never written for us before -- and asked them to guest blog. These columns are written by people who are living with HIV, have been affected by HIV, or work in the field.

I have witnessed this experience everywhere from the small rural towns of Mississippi to our headquarters in metropolitan Atlanta. And each time the question is: "Why haven't these Women of Color disclosed their status?" Well often the answer is:"You don't put your business all out in the streets," or "You don't air your family's dirty laundry."

There is a lot of negativity and heaviness when talking about HIV. People rarely get to hear the positivity and the beauty of living with this disease. So I want to provide a different side of the dialogue around the epidemic and talk about the benefits of living with HIV. Since my diagnosis a little over two years ago, I have seen so many positive changes that I would not have otherwise recognized at this point in my life. As crazy as this may sound, I have gotten to a place where I know I am lucky to be living with HIV.

Most of the cases prosecuted around the world have not actually focused on criminal HIV transmission, but rather on exposure to the risk of transmission. These cases often hinged on whether or not someone with HIV had informed their sexual partner -- sometimes a one-night stand, sometimes a long-term partner or spouse -- that they were HIV-positive before having sex that may -- but may not -- have risked HIV transmission.

The lack of adequate surveillance data is not the only barrier impacting prevention work in Native communities. The unequal allocation of funding and resources; sparse access to quality care and treatment; and the lack of culturally competent, Native-specific programming being supported by funders are all overarching systematic issues. In addition, community-based stigma, taboos around sex and substance use, and co-factors like high rates of poverty, drug and alcohol use, and mental health issues all continue to drive the epidemic at local levels.

I often wonder about how to best educate the general population about the issues and realities facing transgender and HIV-positive people, and it seems like too much for an individual person to do. In fact, I feel that the responsibility to educate lies not only with ourselves as members of the trans and positive community, but also with the general population. They have a responsibility to share their acquired knowledge of us with members of their own communities, so that all communities can be bridged by compassionate understanding.

When the Iowa HIV Anti-Stigma Alliance formed in May 2009, its purpose was to develop effective solutions to barriers and inequities that prevent Iowans impacted by HIV stigma from participating fully and equally in all aspects of life. Part of our strategy was to create a campaign that could be replicated in multiple areas around the state. In my area, Des Moines, we recruited local leaders to participate in a media campaign that stated their individual responses to the tag line "HIV won't stop me..."

As I sit here thinking about what World AIDS Day signifies to the world and to me, I just think of all those who have needlessly suffered and died, even though there are medications that could potentially save their lives. It makes me really angry when I think that the cost of the drugs is more important than the lives they could save. When, because of poverty, there are people on waiting lists to get their meds.

I am also HIV-positive. And three months and 13 days is not the amount of time I have been sober; it is the length of time I have been with my current partner -- my first real relationship after a series of failed attempts at dating since being diagnosed as HIV-positive in February 2009.

I have always struggled with disclosure, whether it is with friends, family or potential partners. But I never really paid much attention to whether my HIV status would, or should, have any bearing in renting a room. So when he questioned my status, I made the snap judgment to err on the side of honesty, thinking that if I were a courteous roommate who paid rent on time everything would pan out. The change was immediate and palpable. He became more withdrawn and what started off as a pleasant exchange was fraying with tension. In the end, he said that he would get back to me within the next few days and I left the apartment with an uneasy feeling in the pit of my stomach.

When I was offered the opportunity to blog about World AIDS Day, I began to think of the actual wording, "World AIDS Day." I was immediately filled with a sense of gratitude. A sense of gratitude for the medications I have, the support systems I have in place, and of course my own good health. This is not to say that people here in the United States don't face their own set of challenges when it comes to living with HIV.

How many women in America go to their OBGYN or a Planned Parenthood office every year to get a Pap smear and a refill for 12 more months of some type of birth control? How many of these doctors recommend or even suggest HIV testing? None that I've been to, in multiple cities and states.

As it is, school-age students are bombarded with misinformation and myths about sexual health and sexually transmitted infections from peers. Now, with the advent of the "reality show," they are also learning about sex from misinformed D-list celebrities. Case in point: the admission from Pauly D and Mike "The Situation" Sorentino of MTV's Jersey Shore that when they have sex in the hot tub they do not use a condom, because "hot water kills all the sperm." Members of the Young Women of Color HIV/AIDS Coalition encounter this type of nonsense constantly as they try to educate our youth on making healthy choices.

[The Lebanese law criminalizing homosexuality], with the stigma and institutionalized homophobia/transphobia that it creates against small communities, plays a negative role in why people, non-heterosexuals, do not have easy access to clinical sexual health services. In some medical cases (STIs for example), one has to disclose their sexual practices as part of the pre- and post-test counseling procedure. Yet individuals from these populations would rather not do so to avoid stigma and prejudgment, keeping in mind that they cannot seek legal protection and justice -- which leads them to avoid going to sexual health services and the unwanted exposure and breached privacy they promise, particularly in a small country like Lebanon.

It makes me sigh with this thought of what I need to do to make people care, as well as break the preconceived notions of what they think they know. Why do I still try? I don't celebrate anything else in my life -- holidays, birthdays, anniversaries. But World AIDS Day always gets my attention, though "celebrate" is not the word I use. It is closer to "recognize" -- sort of like Yom Kippur but for my disease.

I perceived it as a day for Africans. This was pretty much my entire connection to AIDS and World AIDS Day -- I used to view it as a day to distribute food to frail Africans with AIDS who were lying on their iron beds looking at the cameras while the I.V. fluid tubes crossed over their faces. This whole day didn't reserve more than a few brain cells in me. World AIDS Day was not my day by any means. Not even in my wildest dreams -- and wow, if you knew how wild my dreams could get -- had I had ever imagined that at this point, this day would mean something for me.

Knowing is beautiful for those whose results turn up negative, but for people not so lucky, knowing can be absolutely frightening. Ever since the recession rocked the economy off of its hinges in 2008, with jobs, savings and employer-provided health insurance going by the wayside, I have met people who barely want to know the status of their 401(k), let alone their health. Indeed, people are reluctant to find out what they think they can't afford.

There is courage among us, astonishing courage, and we summoned it and survived. And then years passed. We got new jobs and changed gyms.

There was a time when old friends called to say goodbye, and by "goodbye" they meant forever. When all of us had a file folder marked "Memorial" that outlined how we wanted our service to be conducted. When people shot themselves and jumped off bridges after getting their test results.

There is profound, shocking sadness here, right here among us, but years went by and medicine got better and we found other lives to lead.

"So today I am saddened by it all. I mean it's World AIDS Day and I don't have a speaking engagement. Come on, I'm one of the most name-recognizable Black women in America with AIDS and I don't have a gig today. It seems all surreal for me.

So I'm sitting here on my sofa wondering when will the tide turn. I'm wondering when will it ever get better? When will the tide change for the better? When will the numbers decrease for African Americans, both men and women? What will it take to make AIDS important today? Just as important as it became for white gay men in the 80s and early 90s?"

NAAP focuses on traditional practice, ceremony and medicine as an integral part of our organization. Access to and use of traditional medicine and ceremony compliments the Western care that our clients receive and is correlated with an increase in medication adherence, stress relief, improvement in mental health and detoxification of the body. In a brief study conducted by a traditional healer at NAAP in 2003, there was an observed increase in CD4+ cells and decrease in viral load in pre/post assessments among HIV-positive individuals who participated in the sweat lodge ceremony.

He moved to a friend's house and started to look for work, with no luck at all. He didn't know where to go -- until his friend told him to do anything, including prostitution, to get money. Hunk thought about it more than a thousand times. Then one day he went walking down the street and a car pulled up beside him and offered him a ride. Hunk said no -- but then the person in the car asked if Hunk would let him suck his cock, and told him he could pay for it. Hunk smiled and said, "What about 50 bucks?" The customer actually said "Deal!"

[O]fficial government statistics indicate that the incidence of HIV/AIDS in the MSM population is acutely high at 33 percent; however, Victorian-era laws remain on the books preventing the development and distribution of lifesaving prevention messages ... The quantum of this paralysis can be seen in the absence of a nationally focused campaign surrounding the use of lubricants; or the coven-like atmosphere that surrounds workshops organized by NGOs (nongovernmental organizations) working with members of the community.

When I arrived to my mother's bedside, I could see what my grandmother was talking about. My mother was almost unrecognizable and was bedridden because she was in such tremendous pain. She kept saying she felt like she was being poked by needles. Her once beautiful voice was now made up mere fragments of garbled words. And as the days progressed, she only got worse.

AIDS awareness reached its zenith in the 90s, keeping the topic on the national news and in front of people. Activists fought for quicker access to better drugs and you couldn't turn around without seeing a red ribbon. But over the years that visibility has slowly faded. What happened?

As several questions flooded my mind, I also began to feel a sense of guilt. Here I was working among and interviewing people living with the virus, and I couldn't stop thinking about how much I didn't want to be them. Regardless of how many articles I wrote that encouraged HIV-positive people to take control of their health, I still knew that AIDS is a common killer, second only to heart disease and cancer among women.

Enrolling in a drug or vaccine trial is an incredibly heroic act where individuals may well be putting the best interests and health of their community before their own. In fact, HIV vaccine trials have been fraught, with at least one very recent example of an HIV vaccine appearing to increase the likelihood of infection. Individuals should enroll in such trials only after careful thought and consideration of the real and tangible risks, as well as the benefits that a vaccine may provide in the future. This can never happen over cocktails.

As we approach Dec. 1, each of us is gearing up to carry a banner in support of HIV-related issues that are near and dear to our hearts, community, work, activism and advocacy efforts. Whether our focus is access to adequate health care and lifesaving medication, promoting research and the need for a cure, better HIV prevention messaging, resources for the Global Fund or ending stigma and discrimination against people living with HIV/AIDS, we must not forget one critical component in the fight to end the global epidemic of HIV/AIDS: HOUSING!

"The play [Angels in America] ends with these words ... "Bye now. You are fabulous creatures, each and every one. And I bless you: more life. The great work begins."

On World AIDS Day, this more than anything else, is what I wish for you.

This past June marked 29 years since five men in Los Angeles were diagnosed with pneumocystis carinii pneumonia (PCP), marking the beginning of the AIDS epidemic. To date no cure has been found, and more than 25 million people worldwide have died.

In Canada, there were an estimated 58,000 people living with HIV/AIDS at the end of 2005. Of these, around 30% were unaware of their infection, a chilling fact that should drive home the importance, for everyone, of getting tested, and knowing your status."

Women and HIV. Let us first start there. While men who have sex with men (MSM) are still disproportionately affected, the number of women at risk and living with HIV has sky-rocketed at a dangerous and alarming rate. The CDC's 2007 surveillance report reveals that 31 percent of new HIV diagnoses are women -- 10 to 15 years ago, this number was under 10 percent. Overall, women account for an estimated one third of national HIV/AIDS cases. Approximately 80 percent of new infections are attributed to high-risk heterosexual contact, meaning heterosexual contact with a person known to have, or to be at high risk for, HIV infection.

APICHA has been working on HIV prevention in the API communities of NYC for 21 years, and still they say the fight is not over. HIV/AIDS stigma and related discrimination continue to pose a problem for testing with APIs. Candidness is not a common trait in traditional Asian cultures, least of all candidness about sexual practices and health.

We know that HIV has an enormous impact on our African-American, Latino and White sisters and MSM brothers. It's vital that the epidemic be addressed in these communities. It's also vital that we acknowledge and address the epidemic in the many communities, like A&PIs, that are not prioritized in the National HIV/AIDS Strategy. The epidemic continues to grow while we look the other way -- the rate of new HIV infections has nearly tripled among young gay and bisexual A&PI men. Worse, one in three A&PIs living with HIV doesn't even know it.

For our World AIDS Day 2010 Video PSA Contest, we asked you to put together an original and creative PSA promoting HIV/AIDS awareness. Many of you answered our call, and tons of you voted for your favorites. Check out the winners and watch the videos submitted by all of the finalists!

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